Myodil Action Group (UK)

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INTRODUCTION

 

 

In Feb. 1993 the shadow Health Secretary, Mr. David Blunkett M.P., looking at the myodil problem, made four demands of the Government:

 

1. A Public Enquiry should be held into the matter.   

2. Compensation payments.

3. Myodil Arachnoiditis to be made a notifiable illness, with benefits claimed under special rules, as for terminal illness. 

4. Training for doctors and medical staff, in diagnosis and treatment.

 

These are reasonable demands, based on justice and the needs of the people involved. It is still imperative that these actions are carried out, to alleviate suffering. The purpose, of these case studies is to illustrate the issues and problems still facing myodil victims and to reinforce the points about Public Interest. There are six case studies (none longer that two pages); each study in meant to illustrate an area of interest and debate.

1. The Casual Procedure: illustrates that a very serious procedure came to be carried out routinely and for reasons far outweighed by the risks.

 

2. The Search for Relief: illustrates the futile search for pain relief and the lack of medical knowledge.

 

3. Itís All Psychological: illustrates disbelief by the medical profession caused by lack of acceptance of the condition.

 

4. If Been Told the Risks: illustrates that myelograms were carried out without informed consent.

 

5. Nobody Listens: illustrates distrust and conflict between patients and doctors.

 

6. Litigation Prohibition: illustrates legal boundaries set up that prevent  justice.

 

CASE 1 THE CASUAL PROCEDURE

 

This case is meant to illustrate how the procedure was carried out routinely, casually, and for relatively minor reasons.

 

In 1974, Mr. A. was an eighteen-year-old soldier who had complained to the doctor that he had a mild nagging ache at the back of his knee. During this time, at weekends, he was doing thirty-five mile hikes, with full pack and kit, over extremely rough terrain (Brecon Beacons and Dartmoor) whilst carrying out his normal duties during the week.

 

He was sent for physiotherapy on his knee, but, because of his mobility and the amount of work he was doing, the physiotherapist suggested that there was nothing wrong with it and passed him on to another doctor who decided to investigate using a myelogram. It must be reiterated that this was an extremely fit soldier who was carrying out his normal duties during the week whilst doing extra volunteered work on weekends. Also, it should be noted that, at that time, he was below the age of consent.

 

The soldier was inquisitive about the procedure: in answer to his questions he was told that myodil was completely safe, and would be excreted out of the body within a few days. More that thirty years later, the dye is still detectable. The only side effect that he was warned about was, that it was possible get a mild headache afterwards, but which would soon disappear.

 

A myelogram was given; his description of this procedure is similar to others who underwent this procedure: Ďa harrowing ordeal, where I wretched green bile all over the nurse who was holding my hand.' The pain and headaches that followed were incredibly severe. As a result of the myelogram, a laminectomy operation followed. Recently, doctors have looked at the original investigation results and have written that there was no reason for any procedure to be carried out at all.

 

Mr. A. states that immediately on awaking from the operation he knew that something was drastically wrong. Imagine his terror: he had walked into the hospital fit and healthy, with the exception of a mild ache in his knee; he woke up in intensive care in incredible pain, that not even the morphine would take away, unable to move his legs without extreme difficulty or agony. He spent six months in hospital and nine months in a rehabilitation unit learning to walk again. After this time he was returned to unit to finish his radar training; though he never regained his ability to walk without a limp or pain. He had a restricted trade working on a new missile system of which there where too few engineers, so the army were willing to keep him on without allowing him to take up normal duties. In 1978, the army, keen to get the soldier back to normal duties, decided to do another myelogram to see if there was anything else that could be done. This proved to be more of an ordeal than the first. Only a couple of hours after the myelogram, he was sitting watching the hospital TV when he suddenly started to get painful back spasms. He lost control of his bladder; and the nurse, with help from other soldiers, managed to get him to his bed. By then his whole body was jumping in incredibly painful spasms. It was a sore trial. An emergency operation was performed to release pressure on the bottom of his spine, and records show his heart failed during the operation. After coming off duty at work, a relatively healthy Mr. A. had walked into the hospital for a quick investigation to see if there was any way to improve his situation; he was not expecting an operation (he would have refused one) or another six months rehabilitation.

 

This was the end of Mr. A's career and the beginning of a lifetime of grief, disappointment and pain. We had a fit man, who, although underage, had been given a dangerous, invasive procedure, without ANYONE being informed as to the perils involved -- the Hayman report shows that these dangers and risks were known.

 

At that time, there was no way to sue the crown for negligence or damage caused in service and he is not allowed to sue retrospectively. He is in receipt of a pension, but the Pension's Agency do not recognize any myodil symptoms only those symptoms below the lumbar region and his myodil symptoms range from head to toe. He is very bitter about the fact that he can get no redress of grievance; no recognition of his condition, or even a fair hearing. In 1995, at the age of 39, Mr. A. was forced to retire due to ill health.

 

There is, of course, more evidence of the casualness in which myelograms were given, for instance: one fellow had four myelograms; another had his three myelograms in the space of several weeks (surely completely unnecessary). A young girl had her first injection at the age of 12 because her toes were numb; she states she had no backaches or other problems at all before the injections. Her latest Consultant has argued that the myodil injections just weren't warranted. These are not the life threatening, debilitating conditions requiring emergency surgery as the Hayman report claims; and to date, the M.A.G. have not heard of anyone who was informed of the dangers. Remember, instructions for use of myodil warn doctors to use glass syringes (it eats through plastic) and to be careful of spillage (it burns through floor tiles) and this corrosive liquid was injected into the nerve centre of the body, the sensitive spinal canal. This was a very dangerous procedure with doubtful advantages; patients had a right to be informed of the risks.

 

 

CASE 2 The Search for Relief

 

Case 2 illustrates the traditional journeys taken by a myodil victim to find pain relief. Lack of myodil knowledge by the authorities (doctors, pain specialists etc.) severely hampers this process.

 

Mrs. B. had a myelogram in 1976 and recent x-rays show the presence of the toxicant still in her body. This is part of her story, in her own words.

 

  '....... I am severely disabled; I have to get around when I can on two   elbow crutches. I am also in and out of the pain relief clinic for something to try and give me a little relief from the pain; but it does not last very long and then I am back in again. This has been going on now for many years since I had that dye. It has ruined my life completely in every way. I can't sleep because of pain all the day and night.

 

  I go into hospital every four months for lignacine infusion to try and help me; it doesn't do much for me but I am grateful of a little bit of relief. I have to rely on my carers to look after me, my Son 's daughter in law, who is a nurse, and friends and family. I don 't very often go out anywhere now because I am in pain all of the time with my back and legs because I can't sit too long and [although] I can stand very good with my aids, I have to sit down after a few minutes because of the severe pain in my back and legs. The pain goes right into my ankles and toes and I have to wear supports on my legs and ankles.

 

  I was told, by many consultants I have seen, [that] no matter what I have done to get relief from the myodil pain, it will not help me at all. I have been all over the country to try and get help for pain and this myodil is always thrown at me in a nice way but his does not help me. [Both] Oswestry hospital and a hospital in Liverpool tell me the same [there is no relief for the pain] and I have got to accept it because it won't go a way.

 

  I had to retire from nursing because I could not do my job: I had to have a lot of time off and I couldn't even lift or push a wheelchair. The medication I have to take to help my pain is morphine, coproxamol, diazepam, and tramadol. I am also going into hospital for a morphine catheter trial because the morphine tablets are not controlling pain long enough (they last four to five hours instead of twelve). I have had to have a chair fitted up my stairs as I was having a lot of falls.  Some days I don 't know how I carry on, because I am just getting worse every day. As it is, I have no social life at all because of all this. What has happened to me? I wish I'd never gone through it [myelogram] in the first place, because I wasn't told anything about the drug [myodil] so I went ahead and had it because I was told I was going to get better for ever and not have the problems I have got now.

 

The points to note with Mrs B's case are that she wasn't told what to expect and she describes the typical uphill struggle to find pain relief and the lack of real palliative care available for myodil victims. Many doctors do not understand the true nature of myodil-induced problems. One old lady who wrote telling of her pain, states that her doctor prescribes only paracetamol: this is quite horrifying, as the usual myodil pains will not be touched by this medicine.

 

In addition to the above, a great many myodil sufferers visit pain clinics, psychologists and psychiatrists. Chiropractors, osteopaths, acupuncturists and other alternative therapists are seen at their own expense. Other themes common to myodil victims, are; chemically induced meningitis, suicide; health problems due to medication, general mental illness, early retirements, severe monetary hardships, lost jobs and houses, and divorce.

 

Myodil victims are living appalling lives with very little they can do about it and most of these problems stem from myelograms. They complain of lack of sympathy, or even respect, from doctors (one fellow after refusing a second myelogram, was told that, instead, he was to have a radiculogram: this turned out to be a pseudonym for a myelogram). Hospital authorities lose records relating to myodil and people who have managed to get hold of myodil reports have often had to go through the MPís to do so.

 

One problem, which may explain some doctors' behaviour, is the lack of radiological evidence. This takes two forms, one the disappearance of records, and two, recent x-rays tend not to show up very much myodil in its victims. This is because modern x-rays are often taken up to 30 years or more after the myodil toxicant was injected and the body has managed to dispose of most of it, however, the damage has been done, it is just hidden.

 

In a world where it is painful to sit, stand or lie down, it would be helpful if doctors, psychologists, psychiatrists and social workers understood the exact nature of the problems facing myodil victims.

 

 

CASE 3 It's All Psychological

 

Mrs. C. shows how the medical profession generally views arachnoiditis sufferers. There is also the hint of how the legal profession treated myodil victims (took money off them and then give strange reasons to withdraw).

 

Whilst working as an SRN I injured by back. I was given physiotherapy but had little improvement. A myelogram was carried out at Newcastle Hospital in 1970 and surgery three days later. Following the myelogram I suffered severe headaches but I was told that was due to the lumbar puncture. After surgery I was discharged from hospital with no follow up appointments. In Jan 1971 1 was readmitted to hospital with severe back pain and stiffness. I was told that there was no reason why this should have happened, I was given the impression that they thought I was putting it on and I do now know that it was written in my notes that they felt that there was, 'a strong psychological element' to my symptoms. I was given physiotherapy, muscle relaxants (valium) and painkillers.

 

I was given no support from my employers, the Cumberland Infirmary, and I thought that they also thought I was putting it all on. On my return to work I was first allocated a geriatric ward and it was only after the intervention of my consultant that I was allocated lighter duties. I improved slowly, but never fully recovered my strength or became pain free.

 

In September 1971 I married and moved away from Carlisle, but could not work for six months: the pain continued and I was prescribed painkillers and Valium. During this period my memory is very vague, I put this down to the amount of Valium I was prescribed. I have whole incidents in my life I cannot remember.

 

In May 1972 I secured a part time job in the A&E dept. of Kendal County Hospital, however, I soon found my back beginning to deteriorate and I was again referred to Newcastle Hospital. X-rays showed 'residual myodil in the lumbar sacral spinal canal,' but this was not sufficient to allow re-screening and a second myelogram was performed on 22/11/72. 1 cannot remember any of the discussions that took place at this time; but I was in so much pain I would have let them cut my head off just to get rid of the terrible pain.

 

After the myelogram I again suffered severe headaches. Surgery took place soon after. I was again discharged on painkillers and muscle relaxants but no follow up appointment. In my notes dated December 1972 my consultant orthopaedic surgeon raised the possibility of Arachnoiditis; though I have no recollection of this being put to me or being explained to me. Once again my back seized up and another x-ray showed myodil residue present. Again I was told that there was no reason for this to have happened and was made to feel I was putting it on. I was given physiotherapy, Valium and painkillers. After discharge I resigned myself to a life with a 'weak' back and just having to put up with it.

 

I always felt that they were treating me as a young woman and young people should not have bad backs and I was just putting it on. When I went to the doctors I would complain of other symptoms [these were provided]. There were times when I was in pain but had relatively good movement in my spine and this was never thought through. The doctors met me with no response. There were times when I thought I was going mad. There were times when I began to think I really was imagining things. I have sat many times with the pain asking myself, 'are you sure there is pain and you are not imagining it?' But I then had to answer, 'Yes there is real pain.' I got to a stage where I tried not to bother with Doctors; but when things did get bad and I worried about my back I would pay to see someone privately in the hope that if I was paying they would at least listen to me, but it did not work. I always came away in tears.

 

Over the years as usual I had my good times and bad. I suffered from back and leg pain and greatly from migraine and as time went on the bad times became more frequent. In 1990 I read about the myodil problem and recognized the symptoms immediately. I contacted a solicitor who sent for my medical records and had an MRI scan on 15/10/92. The problem here is, that despite previous reports of residual myodil and arachnoiditis, this latest doctor said that there was no definite evidence of arachnoiditis. I pursued the case no further as I could not afford the cost. Yet again I had been made to feel it was all psychological!!!!!

 

In June 2000 1 had another scan and was told the results showed evidence of arachnoiditis possibly caused by the previous myelograms! I was told there was nothing that could be done and that I just had to keep as fit as I possibly could. As a result of this latest scan, I once again contacted a solicitor in an attempt to get compensation and was told that as my myodil had been used before 1973 I had no claim!!!!!

 

Mrs C's story is a common one amongst myodil casualties: disbelief at the wide-ranging symptoms; conflicting diagnoses; bizarre solicitors advice and the suggestion of psychosomatic symptoms.

 

 

 

 

CASE 4 If I'd Been Told the Risks

 

 

Mrs E. had two myelograms in the late 1970's; the result was that, at the age of 38 her working life ended. Mrs. E. went to hospital in 1978 complaining of backache.

 

My consultant informed me that I was to have a myelogram. He stated that it was a dye injected into the spine for x-ray purposes. After the x-rays, surgical staff attempted to remove the dye. A nurse present at the time, informed me as the task was being attempted, whilst at the same time she expressed how the team were struggling to complete the procedure. As a result the dye was NOT removed. I suffered the most horrendous headache and sickness; more procedures followed for which the records are missing. During this time I was unable to walk, sit up, in fact I was bed fast, virtually unable to move and completely dependant on the hospital staff, for whom I have nothing but praise for. Eventually I was allowed home under my G. P.'s care. From then on I was unable to walk unaided and at this time was virtually house bound.

 

I have a number of problems resulting from the myelogram: arachnoiditis; excessive pain and limited mobility; spasms at night interrupted my sleep pattern; increasing medication for pain relief and inflammation; Stress due to inability to live my life to the full or perform the ordinary things that I'd done before the injection; stress due to sorting out myodil related legal matters, and the struggle to obtain my medical records since 1992.

 

All the expenses incurred for the M. R.I. scan and private consultations were met by me, and due to the spiralling costs I regrettably had to draw my claim to a close. Another problem was that a consultant advised me that the Arachnoiditis was in his opinion caused through surgery. How then was it, that the symptoms and side effects were present before the surgery? I feel that one doctor was covering up for his colleagues.

 

If I had been made aware of the enormous risk involved in myodil, I would never have jeopardised my health by having a myelogram. The risks involved were there and recognised by health officials in this country and all over the world, yet NO ONE bothered to outline these to me.

 

I had walked unaided into hospital with backache little knowing that one myelogram would ruin my life and leave me disabled, and with the fear of what's to come in the future.

 

CASE 5 Nobody Listens

 

When doctors come across myodil casualties there are often problems because Myodil Adhesive Arachnoiditis doesn't fit their orthopaedic model of the human body. The lack of knowledge of the medical profession about this condition causes unnecessary conflict and distrust between doctor and patient. Mrs. D writes:

 

  'For years I have been fobbed off by doctors who have been trying to make out that my problems were psychosomatic/marital/trying to get out of teaching stress, and at the scanning centre I felt intimidated.í

 

She goes on to describe how her consultant was oblivious to her medical conditions (shown on scans taken years earlier). She then contacted the radiologist to enquire about the problem, describing how she 'had to be insistent to be put through to her'. The radiologist agreed to look again at the scans, and, if she found evidence of myodil and previous conditions, she would make a modified report.

 

  'I will not go into the consultant's reactions, or what he said, but there   were threats, misdiagnoses, etc. I made extensive notes immediately after each one. They may not be useful but it has been an alarming experience, and it's ongoing. Doctors are frightened of diagnosing arachnoiditis and of being involved. What was written on the consultantís reports in NO WAY reflects what was said during consultations.

 

Mrs. D. then shows the consultants reports before and after she insisted they re-look at the scans. The relevant differences are, from the first report: 'Indeed there was no evidence for any previous problem related to intrathecal injection.' Compared to the second: 'The radiologist submitted a revised report.... which did reveal some evidence for local arachnoiditis in the lower lumbar spine.' Mrs. D's story is by no means unique. Mrs. E's experience was far more confrontational:

 

 'When Mr. X. did his ward round he was appallingly rude to me in front of the other patients. He screamed and shouted at me.... that 'I shouldn't be there,'(he didn't give any reason why!) When he left I cried for 2 hours on the ward.... as the radiologist put the needle in my back there was a terrific feeling of pressure rushing from my head and I nearly passed out... I had a severe headache and began to see black spots floating in my visual fields. However, although they offered me to stay at hospital, there was no one at home caring for my disabled husband and son so I had to go.... My left leg faded away to become really thin and the floaters in my eyes and headaches became worse. I was refused all help from social services despite the fact I had a disabled husband and a young disabled child and I couldn't walk. I was refused state benefits because I had no one medically qualified who'd state the cause of my illness. I considered suicide and only didn't carry it out, because I had my poor, disabled son reliant on me.

 

 My G. P. tried to send me to the A&E to see a consultant ophthalmologist at P. hospital, regarding the black things floating and terrific headaches. The Consultant threw me out without examination stating, 'floaters, youíll soon learn to live with them.

 

 Further appointments at the P. hospital were promised, but not received. In the end, through the help of my M. P., I obtained an M.R.I. scan at Addenbrookes hospital. The consultant radiologist who did the scan said, 'We can see the exact cause of your problem.' I was therefore surprised when I returned to P. hospital to learn from the original consultant, 'there is nothing wrong with your back.' I can still produce a copy of my DHSS claim for mobility allowance (which was disallowed) where the consultant had told them that, 'the MRI scan was normal.

 

Eventually a private hospital in London obtained the scans from Addenbrookes and wrote out their findings to the DHSS pronouncing the back as inoperable, allowing the mobility allowance. Her tribulations didn't stop there. Her eyesight, which had so altered straight after the myelogram, had virtually disappeared in her left eye and her G.P. tried to make another appointment at Addenbrookes; but no appointment came. Despite repeated phone calls and letters front he G.P. no appointment arrived. It would seem that her previous run in with the ophthalmologist had not been forgotten. Blind in her left eye, her right eye beginning to fade she got into a taxi:

 

 'To go to the eye casualty department with the intention of refusing to leave, unless they did appropriate tests on my eyes. I sat there 1O hours.  Luckily for me, there was an American woman doctor on duty and not used to our corrupt NHS, she examined my eyes, ordered a fleuroscene angiogram and when the yellow dye put in my arm was photographed [it showed] oozing from the blood vessels in both my retinas. I was told that I had 'old retinal haemorrhages, which had caused the deterioration.

 

Eye problems have been well documented in myodil victims, yet ophthalmologists are ignorant of the fact. The point is, not that one or two people have had bad experiences, but that, at varying degrees, a very great number of myodil victims (if not all) have faced ignorance and disbelief from the medical profession.

 

CASE 6 Litigation Prohibition

 

The last case focuses on the way myodil victims were prevented from litigating against those responsible for their injuries and poses a question about Public Interest.

 

Myodil victims suffer dreadful physical and monetary hardships because of the assaults upon them; despite the immoral actions, battery and negligence, against their persons, they are denied compensation: this has been done in a number of ways and the legal profession have not been blameless here.

 

A class action started against the makers of myodil but it was never allowed to come to court; thousands of victims were denied justice; and the public interest has been circumvented as a result. Litigants were forced to withdraw for various reasons:

 

 'Unfortunately, my case was thrown out by the consultant saying that the surgery I had following the myelogram could have caused the arachnoiditis.'

 

This reason is common, however, even the most superficial questioning by a competent solicitor would expose the flaw in this argument. Surgical arachnoiditis and myodil induced adhesive arachnoiditis are disparate conditions: though often confused by the medical profession, their symptoms are considerably different.

 

 'After paying £500 for the scan and £3000 to the solicitors they told me that I would have to pay up front £37500 and a further £57000 six months later.'

 

The exorbitant costs for myodil victims is the most common reason given, but why were the costs so excessive? Here is the explanation to one litigant:

 

 I had to arrange for the M. R.I. scans privately and then paid a number of thousands to my solicitor only to be told by them that, if I wanted to continue with the action, I would need to find approximately £40000 and more later. I was advised that, unless I was extremely rich, or extremely poor (some could get legal aid certificates), that it wasn't worth carrying on.

 

 Somewhat confused, I asked why I needed to come up with such a sum and it was explained that Justice May had made the decision that any litigants had to pay the costs of research done into this case by the Legal Aid Board. They had spent ten million pounds on a study of the case. I argued that this was unjust and atrocious. All of the money used by the Legal Aid Board for the research came from the very tax payers who where now being asked to pay for it for again. Surely, I maintained, that it was unfair to ask litigants to pay for research made on their behalf, when they had provided money all their working lives to enable the research to take place in the first place. I asked what would happen to the research and was it accessible to the public -- after all it is public money that funded it. I was told that unless the money was handed over, it would not get used; and that the legal profession were in no way going to challenge Justice May's extraordinary decision.

 

The legal mischief didn't stop here: with the knowledge that this decision would effectively bar thousands of victims from justice, Justice May also Issued the order that no myodil victims will be able to sue the company after a certain date giving litigants no chance to appropriate the evidence obtained by Legal Aid Board, or to challenge the law.

 

This inequity extended to the public arena too. There were many charges laid at the N.H.S. and the medical profession in general, yet victims were barred from compensation from those sources by the Hayman Enquiry, a one-sided report, completely devoid of critical argument. The Hayman Report showed wrongdoing, yet it was used as a reason to prevent compensation∑

 

 There is another aspect to this case and that is that this is assuredly a Public Policy issue: there must be an investigation to prevent such dire consequences happening again. It must be in the Public Interest to ask:

 

 1. IS THERE ANY OTHER PLACE IN THE WORLD WHERE SOMEONE IS LEGALLY ALLOWED, FOR WHATEVER REASON, TO INJECT A KNOWN TOXIC, HIGHLY CORROSIVE SUBSTANCE INTO ONE OF THE MOST SENSITIVE PARTS OF THE ANATOMY, WITHOUT THAT PERSON'S CONSENT?

 

 2. IS THERE ANY SUBSTANTIAL REASON WHY THIS IS NOT BATTERY AND, THEREFORE, A CRIMINAL OFFENCE?

 

 

 3. IF IT IS A CRIMINAL OFFENCE, AND IT SURELY MUST BE, WHY ARE VICTIMS NOT ALLOWED REDRESS?

 

 

 4. ISN'T IT IN THE PUBLIC'S INTEREST TO CORRECT INJUSTICE AND PREVENT FURTHER SUCH OCCURRENCES?

 

 FOR MYODIL VICTIMS, THERE CAN BE NO JUSTICE WITHOUT A FAIR HEARING AND A CHANCE TO LOOK AT AND REBUT EVIDENCE.

 

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